FRIDAY, Aug. 4 (HealthDay News) -- Chronic fatigue syndrome has been accepted as a medical condition for almost 20 years. Once passed off as a series of sometimes ambiguous complaints about pain in the joints and a general malaise -- primarily by females -- the condition was confirmed by medical researchers as bona fide in 1988.

But classifying a painful physical condition as real doesn't necessarily mean that there is a specific treatment to make it better. What follows is a good example:

The young girl had been receiving treatment for chronic fatigue syndrome for three years before anyone at the Johns Hopkins Children's Center noticed her special condition.

In evaluating the girl's condition, Dr. Peter Rowe thought he had looked at everything. Then, a lab clinician made an offhand observation that the girl also had joints that could bend and twist much more than normal.

"I was chagrined that my physical examination had not included that. So, we decided to look into it," Rowe, a professor of pediatrics, told HealthDay.

What he and other researchers found was puzzling, to say the least.

Sixty percent of the 60 children and teens they treated for chronic fatigue syndrome also had hypermobility in at least four of their joints. Only 20 percent of the general public has a single hyperflexible joint, such as being able to bend a pinkie 90 degrees backward, touch the thumb to the forearm, or bend at the waist and rest both hands flat on the ground.

"It was a surprise," Rowe said of the discovery. "Some of the kids would be able to put their leg behind their head in a seated position. Others could do the splits. Once we saw this over and over, we thought it was something that needed more study."

Their findings, which appeared in the Journal of Pediatrics, add a vexing wrinkle to the current thinking on chronic fatigue syndrome.

In the past, some doctors regarded the syndrome as a psychosomatic byproduct of depression. And those who saw it as a legitimate illness could find few physiological signs of it.

"In the past, you had a tremendous amount of skepticism about [the syndrome], which created a certain amount of stigma for people who have it," said Leonard Jason, a professor of psychology and director of the Center for Community Research at DePaul University in Chicago.

The recent study, he added, "could ultimately lead to us understanding the physiology of this condition."

The syndrome affects four adults per 1,000, but fewer children. To be diagnosed with it, a person must have a sudden onset of fatigue that lasts at least six months. There must also be four of the following eight symptoms: impaired memory, sore throat, tender neck or tender lymph nodes in the arm pit, muscle pain, joint pain, new headaches, troubled sleep and a feeling of malaise after exertion.

Rowe emphasized that having hyperflexible joints doesn't mean a person will have the syndrome. Just how the two are related is little more than a guess, Rowe and Jason agreed.

Children develop joint mobility in their early years, while the chronic fatigue syndrome doesn't generally show itself until puberty. It is difficult to find a causal relationship between the two, because not everyone who has the syndrome also has joint hypermobility, Rowe said.

Still, he wondered whether flexible joints may stress the peripheral nerves in the arms and legs, thereby fatiguing the entire nervous system, or the excessive range of motion may indirectly cause the syndrome.

"For example, if you're prone to injury because of your joints, you might decrease your activity, which studies have shown can lead to [the syndrome]," Rowe said.

To find better treatments for chronic fatigue syndrome, Rowe said he wanted to study hyperflexible joints in greater depth, and test whether they are also more common in adults with the syndrome.

Jason, though, said research should be aimed at genetics.

"I think there may be some genetic factors. We really should look at the parents. There could very well be a number of things passed on that make kids more prone to [the syndrome]," Jason said.

I was diagnosed this year with hypermobility syndrome by my rheumatologist (Ehlers-Danlos Type III). My sister who is in her 60s was diagnosed a week later by her doctor - he had no knowledge of my diagnosis.

How odd that we would go all our lives with this, all kinds of problems with mild to moderate dislocations and pain, and then both get diagnosed within a week of each other! I guess rheumatologists are becoming more aware of the syndrome and how it relates to FM.

This apparently came through my father's side of the family. Two of my daughters also meet the criteria.

I wonder if I would have tested positive for hybermobility. I used to do this thing as a child where I could bend my leg to hook my foot up under my ribcage. I also had ankles that would flop over easily.

To quote the article, "chronic fatigue syndrome doesn't generally show itself until puberty." Do we agree with that? Personally, I had continual viral, sleep, and pain problems as a child, but the fatigue didn't seem to begin manifesting until puberty. After that, I was suddenly the slowest runner in class and couldn't keep up.

I was always told as a child by my Physical Therapist and doctors that they couldn't believe with my pain I was so flexible, more so than the normal person. It would have been intersting to have actually been give a diagnosis as a child. I was suffering from RSD (then called RND and now has a newer name but I don't follow--I know children afflicted with the disease develope FM at a pretty high rate)
I have lost a lot of my flexibility in the last couple of years but it use to be no problem to put both legs up to my shoulder, to reach back and scratch my own back, bend over and touch floor easily despite obesity and I can still bend my pinkies back pretty far. This is very interesting.
A

I'm hypermobile (currently nursing chronically dislocated right thumb, dislocated right collar bone & three twisted vertebrae at the base of my spine). I think this link has been highlighted before.

However, there are a couple of points in the article that I strongly disagree with:

1) "Children develop joint mobility in their early years..."

Not necessarily. Joint hypermobility (if a form of Ehlers Danlos) is a genetic condition that you are born with that causes the formation of faulty collagen. The symptoms can become worse with wear and tear as you age, but these can start at any age from birth onwards.

2) "For example, if you're prone to injury because of your joints, you might decrease your activity, which studies have shown can lead to [the syndrome]," Rowe said.

Nonsense. The only people who think that CFS is caused by a decrease in activity are those who still push GET as a cure. If CFS is caused by lack of exercise, how come I was going to the gym two or three times a week when mine hit me? I'd like to see those so-called "studies".

I can't decide whether this is sloppy journalism or just half-informed comments on CFS by a medical team who don't really understand it ('cos that never happened before!).